Cerebellar Atrophy-possible genetic problem

hummerlady at my-deja.com hummerlady at my-deja.com
Wed Feb 2 15:56:52 EST 2000


My new neurologist has told me that he think my cerebellum is atrophied
and degenerating due to an inherited genetic disease process.  I
thought he told me it was called something like "Meyer-Jacobs".  I
cannot find any medical syndrome or disease by that name.  Obviously, I
heard it wrong or I'm spelling it wrong.  Can someone help me get the
right name or spelling?  He said a lot of my problems are similar to a
ALS patient or MS.  I would like to get in touch with some kind of
support group but when I called an ALS organization they wouldn't help
me because I don't have that diagnosis and the brain injury
organization said they only help people with traumatic brain injury.  I
guess my disease or syndrome is NOT politically correct.  All I want is
some one to talk to about it and get some advise on how to cope with my
declining physical abilities (walking, talking, swallowing,
incontinence, etc.).  The doc said no one is really doing research on
my kind of problem--it isn't a popular disease they want to pour
research money into.  That is very disappointing.  The attitudes of
some of these organizations I called was very upsetting.  I was a
nuisance to them.  They didn't even attempt to steer me to another
organization that might help.  I only called them on my neurologist's
urging.  I regret it now.  I'm more bummed out than before I called.  I
know my illness is very serious.  I try hard to find enjoyment with
little things like a beautiful hummingbird at the window or my cats
laying in the sun.  I'm not dead yet.  Please help if you can.  Gloria


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